Monday, May 13, 2013

D-Blog Week 2013 Day #1: Share and Don't Share

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

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It's a mixed bag, isn't it? The idea of someone on my team reading what my daily life is like with the D is, at first glance, kind of dreamy. "They'd know how much I think about it! How many times a day my mind goes to my meter, my pump, what my carb count is, if I have glucose tabs, that I need to make that appointment, order those supplies..." Because our effort is as chronic and endless as diabetes is, but sometimes it doesn't feel like that's noticed or appreciated by doctors. My A1c doesn't always reflect the amount of mental or emotional energy expended on just getting through the day with diabetes, you know?

Or maybe the dream is them seeing that I actually have a life - that I have a family I need to stay healthy for, friends to spend time with, a job to succeed at - things I do that are more important than my disease. That when I miss a week of logging or let too much time pass between appointments, the reason is that my life is NOT my disease. That all the time spent worrying and planning and thinking and counting and measuring and everything else is actually just time I'm investing in being able to do something besides Being Diabetic.

Or maybe the dream is for them to see the value of a support network like the DOC. That I felt isolated and terribly burned out after so many years of dealing with my disease alone - I had doctors who looked at my numbers and family and friends who loved me, but I had absolutely no one in my life who understood what burnout feels like or had anything to say about which pump I should buy or where I could find glucose tabs that don't taste like chalky ass. Today I jump on Twitter for five minutes when I need a question answered or want to say hi to friends who know what a middle of the night low is like, post here when I want to share an experience or really need to work through something. And having all those people at my fingertips, day or night, is just an indescribable relief. I can get through any shitty diabetes day because I know there's someone out there right this very minute who's dealing with the same uphill battle. I have comrades-at-arms, and it's incredibly powerful to know that.

Or maybe I don't want them reading my blog at all. After nearly twenty years of diabetes, I have been through a lot of doctors. For the first time, I feel happy (!) with my team. I have a doctor who seems to get that I'm more than a compilation of blood sugars and basal rates. I have a CDE who looks at my logs with me rather than for me - we make adjustments with both our input, and she seems to understand that she might be the professional but it's MY body and perhaps I know what that 7am BG bump means better than she does. I have an ophthalmologist I positively adore and want to adopt as my new favorite uncle. So if I'm happy with everyone, and I think we're working well together, why do they need more information than what they've already got?

So maybe that's it. I spent a long, long time wishing my doctor would just see this about me and that would fix everything. Or that the awful nutritionist I saw when I was a teenager should have shut the hell up about the kind of milk I drank. Or that Big Nan wouldn't have tainted so many years of my life with fear. Or that X or Y or Z. But I don't think reading my blog would have made Big Nan less awful, or informed that endo about how to gracefully deliver the news that I have another autoimmune condition. Rather, I think it all boils down to my doctor or CDE or whoever being a bad fit for me, someone who didn't bother to look beyond my numbers and see that there's a person sitting there.

I'm lucky to have found a good team, one that fits who I am and helps me be a healthier person. Good doctors are hard to find - I'm going to hold on to mine with a death grip. Let them read whatever blogs make them happy, just as long as they keep doing the great job they're already doing....

7 comments:

This is great, Karen. I'm holding on to my current team with a death grip, too. And "indescribable relief" is a fitting term for what I've found in the DOC. Relief. I've been looking for that word. I would always balk at the idea that I needed "support" as a kid/teen/young adult, but I don't think I ever would have turned down RELIEF.

Although there might be a change I'd make here or there with my team, I TOTALLY get holding on with a "death grip". When I read some of the other DBlogWeek entries on this topic and the horror stories they have with their team/dr, I am reminded of how incredibly lucky I am.

Hi there.

I'm Karen. I'm a PWD - Type 1 diabetes, to be exact. I live in Brooklyn. I obsess about things. I have a husband, a darling little girl, and two cats (all awesome). I read a lot. I love coffee (a bit too much).